Arthritis…

The MRI my PCP ordered came back showing advanced arthritis in my neck (and likely back also, since it gets worse the further down my neck you look).

It’s apparently from overuse… And I have the neck of someone twice my age.

She said it can explain some of my symptoms, mostly the tingling & pain in my left arm, but not the vertigo, confusion, memory issues, shortness of breath…

There’s nothing else there though; no disc erosion, no herniated discs… That’s a relief.

Now, off to PT to see if I can learn stretches and strengthening exercises, and also help this most recent round of vertigo that hasn’t subsided in going on 3 weeks.

Advertisements

“Out of the norm”

So much better today! Still got a touch of vertigo, and congested, but the brain zaps and the psychotic thoughts are mostly gone.

It’s nuts what some of these meds can do to people…

How many unsuspecting folks take drugs prescribed to them, hoping to feel better, but end up with something so much worse? How many people find themselves trapped in a vortex of side effects that medical professionals insist are not side effects simply because they are out of the norm?

For all we have advanced in medicine, we still know so little about so much of what goes on in our bodies.

I tend to be weirdly sensitive to meds; some work way better than they should, while others work in very weird ways. My reaction to gabapentin is just one example. I’ll also sleep for 3 days straight with 5mg of haldol; meloxicam works like speed when I first take it; geodon & abilify have a heavy intoxication effect; mood stabilizers, antidepressants, and gabapentin make me hypomanic & psychotic; Novocaine only works at really high levels, but then it takes forever to wear off…

My body works differently than most doctors expect, yet they dismiss my experiences and chalk them up to mental illness because they don’t fit the mold.

I’ve had more than one doctor deny my sore throat, because it didn’t look inflamed when I complained about it. Then they are surprised if I walk in with all the physical symptoms of one, but I don’t feel the pain anymore because the swelling and redness show up after it no longer hurts.

Having “norms” to judge disease by is great, as long as the person in front of you fits the norm.

There are people out there with low baseline blood pressure. Unless they’ve been seen & measured at their normal baseline, no one will figure out that what looks like normal blood pressure for everyone else is really high for them (and that’s only assuming they’ve seen the same provide or group enough to establish a lower baseline, and have it flag for said provider when it goes up).

Anyway, I wandered off on a tangent, sorry.

Keep advocating for yourself out there. Know that not everyone fits the “norms” medicine has established, and sometimes you might need to put your foot down if you are not being heard. I’ve been lucky enough to find providers that are willing to listen, and people willing to help me advocate for myself. Hope you can find that too. You got this!

(Sorry, brain is still a bit zappy & foggy, so this might not make the best of sense)


Buzzing

My brain feels all “zappy” and twitchy today.

My body definitely dislikes gabapentin.

I can’t wait for all these side effects to be done with…


Hard NO on gabapentin ever again. **Trigger warning – self-harm thoughts**

I really need to remember (and underscore) that psych meds and I really don’t play well together.

I’ve noticed, and been able to label, psychotic thoughts getting stronger with each dose… The biggest “aha” moment came tonight after my evening dose (#3 in total) when I scratched an itch on my scalp, and thought “I should just rip it off”, and I pictured myself ripping off a large chunk of my scalp to relieve the itch. That is not a normal thought!

I may be experiencing psychotic thoughts, but I’m aware enough to recognize them as such.

After figuring that out, I did a quick Google search; apparently, psychotic agitation is a “rare” paradoxical effect of gabapentin…

References on this phenomenon:

There’s more out there, but I’m having trouble concentrating… My tongue is very present at the moment, and it’s flashing up a thought to “just chew it off to stop it from feeling that way”… Seriously not fun right now…

I feel like I might cry and laugh maniacally at the same time… My emotions are all over the place, mostly hypomanic & psychotic. I know I need to turn over and try to sleep, I just need to stop being scared of the thoughts. They are just thought. I don’t need to act on them. They will pass. I just need to let myself sleep…


Freaking out: meds or ptsd?

Started taking gabapentin for fibromyalgia, and it’s triggered flashbacks (tried it as a psych med many years ago during several stints inpatient). I’m having trouble grounding from feeling out of control and scared… I text Dr. C a bit, but… I dunno. I can’t shake the feeling of being helpless in this situation, and having no choice in whether or not I take this med (though I know I totally have a choice, and could stop anytime I want to; no one is forcing me or threatening me about it this time). Part of me is still shaking in a corner, waiting to be hospitalized if I don’t want it…
I dunno. I’m not sure it’s worth this panic. The pot does reasonably well with the pain, so maybe I just need to stick with that? Maybe now that the neurologist says this is likely fibro, maybe I just need to learn to live with it with the meds I currently have?

I’m totally freaking out on this gabapentin. I want to self-destruct in so many ways, and I’m not sure if it’s the meds or ptsd.

Neurologist said to give it till Monday…


Some progress on the physical stuff (or, at least a direction to look in)

Saw the pcp on Tuesday.

L had the idea to make a comprehensive list of all the symptoms that have come up in the past year or so. It helped tremendously! We were able to give it to Dr. S, and she was able to get a better picture of things. She’s thinking that a lot of it can be related to a potential cervical vertebrae problem; we just have to figure out imaging. I have a chest piercing that had the radiology nurse really uncomfortable last time, enough that she said they would refuse to do further imaging from the waste up unless I had it removed… that would take a surgical procedure, and I’m just not interested in losing it forever if I can find another center that will do the imaging… so I’m waiting to hear back from her office about the next steps around that.

She’s also going to set up a referal for a second opinion on the neurology side of things, but I have to send her a copy of the neuropsych report so she can include it in the referral. I have that pulled together, just need to make it out to the post office to mail it.

I really hope something is figured out around this, and I hope there’s an easy, painless, non-invasive fix for it…

In the mean time, we are trying meloxicam for the pain… I took the first dose tonight, and I’m wired. The first 2 hours after I took it, I felt hyper, as if I’d taken an upper. I hope, if that’s one of the ways my body reacts to it, that it goes away soon. It actually helped the pain for those two hours, but it wore off quickly… it was the lowest dose though, so maybe a higher dose will help longer? I dunno, but it was nice to feel pain-free for those 2 hours or so.

So, we’re have some other things to look into. Hopefully one of them will yield answers.


Hypersensitivity to smells (gonna whine now, feel free to skip reading this)

Back in November-ish, smells started to bug me. I’m not pregnant; I’m 100% sure of that, but strong (and many food) smells turn my stomach.

I mentioned it to my doctor, and she suggested I contact a local taste and smell clinic. They have a long wait, and I just sent out my paperwork yesterday, but I’m hoping they can give me some answers.

The hypersensitivity to smells is just one more thing that seems to be piling on to my list of weird symptoms that come along with the muscular pain.

While I’m waiting to hear back from the clinic, I’m struggling to get through the day dealing with most smells making me very uncomfortable. I’m hyper aware of the smokers in the building, I can’t stand the smell of cooking food… it’s so uncomfortable, I find myself wanting to cry (well, that & the muscle pain/cramps). Mint is a tolerable smell, so I’ve gotten into the habit of dabbing mentholatum rub under my nose to curb the nausea…

I dunno… the clinic’s website says they generally can only help about 1/3rd of the people they assess. I hope I fall into that 33%; I don’t want to have to live with this hypersensitivity (though my mom also has a similar intolerance for smells. She developed it in adulthood…)

I’m so tired and run down. Triggers around loss abound, and it’s not helping anything at all. A friend’s 6-year-old daughter died unexpectedly Sunday morning (in her sleep, cause as yet unknown, though she had several serious medical issues), it’s coming up on the anniversary of Chow’s death, my brothers in law’s dog passed away the same day I felt like someone died, but couldn’t think of any anniversary… and my 40th birthday is around the corner. I don’t feel 40. I don’t want to be 40. I shouldn’t have ever lived this long… Dr. C suggested that maybe this dread of age is rooted in past experiences (especially since it’s paired with the feeling that someone’s passed away)… it kinda makes sense… doesn’t matter though, since she’s now off for 2.5 weeks in the tropics, so I can’t really process that with her beyond Monday’s brief conversation.

I guess I have a fair amount of reasons to cry, but it still feels unwarranted… I’m just so tired.

The depression hit super hard a week ago Monday, and very suddenly; it felt like a switch was flicked. The intense depression hit, the muscle cramps and pain started, that bitter taste came back (it colors everything I eat or drink)… the smell thing is just intensifying… it’s all so oppressive…

So yeah, whining…